"Begging for appointment"

5 years ago I was diagnosed with an incurable neurological illness , cerebellar ataxia , the consultant wrote the word on a scrape of paper I told me to go home and look it up on the internet. It is not a good way to find out that you have a progressive, incurable, gentic disease. I had a lumbar puncture and blood test, but the consultant left the hospital and didn’t hand my case on.

Apart from the first appointment I’ve had to beg for every follow up appointment over the last 5 years. Recently I been told the appointments are full until September and we can’t book any after that yet. I should have been seen already. I have two dependant children yet I am being forced to spend my disability benefit on private care.

When I get to see the consultant I have now he is informative and caring. It’s the appointment system that’s the problem I’m just a number on a waiting list, a annoying statistic.